Feeling a bit low at the moment.

[lottiejenkins]

my ds is 11 and profoundly deaf and has dyspraxia, global delay and behavioural problems, and im a widow of six years.
He is away all week at residential school.
Just recently his behaviour has become worse and we have been referred to a deaf behaviour unit. In half term i have to take him to London which is an hour and a quarter on the train then to Tooting (my sister will be with me for the tube part) the appointment is two and a half hours then back to train to go home, then on the friday we have a ward visit prior to him having a mri scan done on November 5th. Im feeling really low and worrying about how he will behave in half term and on the train to London. At the moment i feel like being left on a desert island for a week with enough food, drink and books to keep me amused. Sorry to moan on but as i said am feeling low. I know there are children out there with more probs than my ds but everyone now and then i just feel overwhelmed.

and i think youre perfectly entitled to feel that way and to have a moan. i moan and i have nowhere near the amount of stress you so admirably cope with

im afraid i have no personal experience or practical advice, except to urge you to try to find some time for yourself to do something utterly indulgent (like sit still in silence for 12 hours - sounds v appealing to me atm!) or whatever floats your boat.
you are a person with needs too - a fact mothers often (almost always?) have to overlook...

i bet the journey and half term will be easier and nicer than you fear - v much hope it goes as smoothly as pos for you. all the best, nlg.

Hi Lottie
don't apologise for moaning its perfectly justified, you have a lot on your plate at the moment & it never rains but it pours!

Although its an extra appointment hopefully your ward visit may help your ds prepare for his MRI.
I notice from your profile your in Suffolk - me too! Which hospital is your ds going to?

My ds is going to Ipswich Hospital MymateMax. I have found them to be very good.

yes my ds is with Ipswich they have always been fantastic.

Hi Lottie. Could your's son's hearing have deteriorated lately and perhaps his current amplification isn't sufficient anymore? I've heard very good things about the behaviour unit in Tooting for deaf kids, I hope your journeys will prove worthwhile. (I have a deaf 8 y.o. son and now a deaf 2 week old DD too. Also a hearing 2.5 y.o. DD.)

We have been going to Ipswich since my ds was three weeks old and we know all the staff so well now. We see Dr Yale. As to his hearing i know it is tested regularly at school, i feel he doesnt show me any respect, he came home from school tonight after having been away all week and in his diary i had to read that he had hit a teacher and bitten a support assistant, it makes me feel low before the weekend has even started!

Its horrible to read one negative comment after the other, do they use the diary to record your ds's successes as well.
Dr Yale was ds'2s paed from birth until he was about two when he was transferred to the community paed, although he's seen Dr James for other bits & pieces as well as Dr Glass at the CDC (CHAMP).
Has anything particular happened to make his behaviour worse recently? Is he still settling in to the new term?

We had a very bad experience with CHAMP ds went through twice and they failed to pick up that he was deaf! Our hearing consultant read the riot act to them and we no longer go there! I cant think of anything that has changed to make his behaviour be so bad.
He just pushes the boundaries all the time and am feeling tired already and he's only been home since 5.15!!

Just read again and they do post positives as well as negatives!!

Sometimes its difficult to see through the negative comments, we are all human & sometimes we cope better than others.
Thats terrible that champ missed your son's hearing loss, how can a room full of professionals not pick up something like that - what hope do us untrained parents have
Ds2 is almost 5 & we only used champ for the first time last October, they've been very nice but so far haven't given anything in the way of practical help.
I do like Dr Yale though, honest & up front!

Are you able to get a good nights sleep?

Oh & if it makes you feel any better ds2 SPAT all over his teacher today - apparently it felt nice he said.

Thanks MMM you have made me smile at least, though im sure it wasnt nice for you to hear that! Managed to get him to put his headtorch and gameboy away at 10.10!!! Which school does ur ds go to? My ds went to Thomas Wolsey till he was 7! Lovely school sadly he outgrew what they could offer him. Agree about Dr Yale too!!

My ds has just started at the local MS primary, we did use Thomas wolsey pre school outreach & ds had his Hydro there & been to orthotics & physio appointments there. It is a lovely school, if MS doesn't work out you never know.

DS spat his drink all over her white top, poor lady